Showing posts with label disabilities life daily. Show all posts
Showing posts with label disabilities life daily. Show all posts

Tuesday, January 15, 2019

Markets' Responsbilities to their PAYING CUSTOMERS! They do NOT care anymore "what or how they sell products"

Asking for "Your Opinions".... If this had or "did happen" to you in your market, how would you feel about it?


I realize there are other subjects, like many of us that are "disabled" and although we go with a disability placard, we may not "look like" something is wrong, oh some days and others we may appear like we feel, and can barely walk. And people are peering at us, or if you have food stamps, and the checkers give us that "look like we are "trash"... or any number of things that as those with "invisible illnesses" may not "go out everyday" appearing as if we are on our "last legs".

As I had explained on a teleconference the other day, we still get those "looks".. like we are "faking" . Yet, below is just as bad, although it's not really about illness or disability, it does effect our "health" or could... if you buy a certain products that are "expired" or contain something "odd" that they should not... those very things can hospitalize or even cause someone to lose their life.


I talk often about the "stress" of life these days. NOTHING is "simple" anymore. Not one day for most people seems "easy" or "without some type of stress. I realize we are our own "worst enemy" when it comes to causing our lives to be entangled in a mess of bills, jobs, technology... so much that was made to make life and stress less, and jobs better, as we "work ourselves" right out of jobs, or the computer gives us "more trouble" than making something quicker.


We have taken away the "human contact" that used to be something we enjoyed. And the "automated" phone calls have just about gotten to where it's impossible to "talk to a "human" on the phone. After 45 minutes of the run a round, from one "voice", music", another voice, another hold, and then they either "hand up" or say "leave a message and they will return your call in 24 hours."


I had posted below on my Facebook page, but it reminded me of another conversation I just had over the weekend, and just how it effects those who are "chronically ill" and all of us.... so I wanted to add it in.



Well ALL of you are in agreement with my thoughts. IF I was a manager or owner of a market, and NO MATTER who the "vendor" was, if my employees saw a product "expired" on the shelves, they would be instructed to bring it to me, or the management, and let the manager handle it when the vendors came in and yes, I agree those vendors must have an "inventory" of stores, what products they leave, what dates those products expire, and it is of course their responsibility to pick those up and replace them. BUT, what irked me yesterday and my problem is this is AN ONGOING VERY FREQUENT ISSUE WITH THE STORE... it is NOT just "one product" it's their "vendors", it is "their own STORE BRAND" and she would not even "listen" to me.... when I was trying to explain, (I had bought two "Mrs. Baird's" pies one cherry and one peach on the 9th. The same day I bought some candles marked down that were marked to 3.88 and had been 7.99 "Frebreeze" brand... which I usually don't buy those, but they were a good price for that, so I bought two of them. I got home, and as soon as I took the little plastic top off of one, a piece of the glass was "chipped" and fell off into the candle. Well, some people may not use those glasses left, but I use the "candle containers" especially the large glass ones with lids for everything.


I have LOTS of them, and they are good for so many things that I put in them... so first of all that chip was where you could cut your finger, or it might "crack" when the candle was burning, plus although this one did not have a "lid" I knew I would find some use for it, so I took it back the very next day on the 10th... to exchange it, and I was going to buy a 3rd one because I did like the way the one I had burned smelled and it burns down "correctly" and it didn't burn up within a few hours... I took my receipt and the chipped one to customer service, and the one lady took it with the receipt and I went to get one to replace it and another one to buy. Well when I got back, another girl, who happened to be the girl that was sacking my stuff the day before with the candles because she even wrapped them in paper sacks so they would not get broken.... and the candle and my RECEIPT and the other woman had "disappeared".... well for the moment, the girl knew about the ordeal, since she was the one that sacked my stuff the day before, so she did an exchange (and by the way when I was back picking out those 2) I picked up about 7 or 8 OF THEM AND EVERY GLASS WAS CHIPPED OFF IN THE EXACT SAME PLACE!


And I even told her, that those were marked down BUT really with those chips in them they should mark them down more... anyway, I get home, and I had NOT opened those two Mrs. Baird's pies yet... so on the 10th in the evening, I did open the cherry one just to take a small bite... I was starving, I had not eaten since breakfast and just wanted a bite until dinner... well as soon as I pulled it out of the box, the "little bit of glazing" usually on them was "gone" as if it soaked into the pie and the crust was almost mushy... so I looked at the expiration date and it was dated JANUARY 7TH, 2019!!! I had bought it on JANUARY 9TH!!! So then I "look at the date on the peach one" and it was dated for a couple of weeks ahead BUT I open it up and took a small bite and it had 'NEON LIKE PINK STUFF" right inside the crust in places...!!!


I even looked to make sure I had not touched something and did it myself, but no I had just washed my hands and there was NOTHING like that to get on that pie! So, I boxed both of them up and took them back on the 11th!!!! Well the woman that waited on me has worked their since "grass" started to grow LOL... forever... and RATHER THAN LISTEN TO ME because I was going to mention the expired yogurt, the fruit with gnats all over it, fruit with mold on it, expired bread, and other things, cheese I had bought shredded that should have been good until Mid Feb. and got mold on it by the 3rd 2nd week in January, and just a number of things they either DO NOT STOCK ANYMORE, OR NEVER STOCK ENOUGH, or it's expired AND NOT JUST ONE BRAND, IT'S THE STORE BRANDS STUFF, ALONG WITH VENDORS STUFF ALSO... and she kept saying "do you want two pies" or what" I finally said NO, I WANT MY MONEY BACK! She did NOT want to even hear a word, blamed it ON STRICTLY THE VENDORS AND SAID IT WAS NOT THEIR JOB, and the people behind me I am sure heard it all, and she did not LIKE the fact, I was griping about their stuff. I took my 2.00 and left to pick up something I needed...


Well, I walk back to where there are some "Bimbo baked goods... and I picked up a couple of different ones because they had them marked 3 for 3.00 IF you BUY 3! Well, EVERY ONE WAS EITHER OUT OF DATE BY 2 OR 3 DAYS, OR WAS GOING OUT OF DATE THAT DAY OR THE NEXT!!!!! I sat right there and I am sure anyone close heard me say, YEAH AND I GUESS IT'S NOT THESE EMPLOYEES OR MANAGERS RESPONSIBILITY TO SELL OUT OF DATE MERCHANDISE THAT COULD MAKE SOMEONE SICK! I was so pissed... there fortunately was only 3 things I needed and it took me 15 minutes to FIND THE DAMNED DATES ON THEM! THAT IS ANOTHER GRIPE OF MINE... THE manufacturer's either put those expiration dates OVER THE OTHER WRITING, OR SO SMALL YOU CAN'T FIND IT, OR IN THE SAME COLOR OF A COLOR ON THE LABEL, anything to "HIDE the damned date stuff expires" because they do not WANT US TO FIND THOSE DATES!!!!

Tuesday, November 15, 2016

WEGO Bloggers Challenge for Monday November 14th 2016 - Monday, Monday.... "Purging what "burns me out", makes me upset, gets me down and out" so I can "deal" with it on Tuesday

This is an easy one. TOO MANY IRONS IN THE FIRE AND TRYING TO KEEP THEM ALL HOT AND READY TO GO! 

Trying to do 100 things at once, being ALL to everyone and not able to just say ENOUGH, I NEED HELP AND I NEED A BREAK FROM THE INSANITY, THE PAIN, I NEED THE SURGERIES, AND I WANT MY LIFE BACK WHERE I CAN DO MY WRITING, MY ADVOCACY AND BE READY TO HIT WASHINGTON DC IN MARCH, FOR THE AF SUMMIT READY TO "ROAR" AT ARE "NEW" CONGRESS!

Since my Mom getting so ill so quickly, and needing my help 24/365/7, and then passing away so suddenly this past June, my life has turned into a disaster beyond anything I could have ever imagined. Being an only child made that even more difficult because it was ME and only myself to do everything. When you are already chronically ill yourself and your own "caretaker" of 13 years suddenly has walked out a year before, I was left to try and hold on taking care of her, myself, and ALL that has gone with that, and then after she passed away, I am still reeiing from "wanting to get back to having some of my life, having surgeries I need, writing and doing my advocacy work. 

I thought once "most was settled" just before the funeral, then just after, some type of somewhat "normal" would begin to come to fruition. 

Boy, what a "slap" in the face I got, with paperwork, and all that STILL HAS TO BE DONE, even though she is no longer with us, I miss her dearly, and although I "thought" we had everything in order long ago, I found out that somehow things got "changed" that I was not made aware of. That has caused hard feelings, and those things were the very last I wanted for myself and my two grown children.

So, hopefully by "telling" this once again, and often what my writing can be for, is to "purge" some of what is stressing me so badly, and help to get my surgery on my neck done at least before the end of the year, and allow me to have back some of that normality I so need in my life.

I LOVE my Mom, and I MISS HER, but at times I am so UPSET AT HER, for "changing" things that did just what I told her it would leave harsh feelings for those left here to continue on. 

 

 

 

Saturday, April 2, 2016

UPDATES ON MOM, the Dementia, Home Health Care, MY CERVICAL NECK SURGERY COMING APRIL 13TH, and EVERYTHING ELSE.....

I wished my "mind" would rest, but I just cannot stop thinking about what ALL has to be done. There is so much to get done for Mom, but also my own stuff, it seems endless. To add to that, I have not felt the best myself, my night terrors are just horrible, and I have had a headache from hell now for at least two days. I know my doctor told me I had a sinus infection last time I was in, and he put me on antibiotics, but at night I wake up so stopped up I cannot breathe. I have to use some nasal spray, and then I can try and get some sleep, but I feel like I am suffocating. I know part of it is this stupid weather.... 
 
we have had NO winter, and now one day it is almost too hot, then the next, like yesterday and even today, it is very cool... it is sunny, but we have had rain for a couple of days now, so my back lawn HAS to be mowed before it gets too tall for me to do it with my new mower. But, our mornings the dew is so heavy it is like rain. So, there is no way to mow it, until later in the afternoon once it dries out.,.
 
I have to go and get Mom a microwave today, and I need a few things, so I have to go do that first, and then I guess I will try and get this back yard mowed... I am also trying to knock down some of the taller grass on my back lot before the city starts griping and then I will have to pay someone to come in with a tractor to mow it... I had gotten some of it down and then sprayed the weed killer on the weeds, so I had it kind of coming under control. Then of course it rained, and without the sun, now it is getting tall again, and I still have not had time to get the people that may get these bees out of that old piece of bus back there... so it will be hard to find anyone who will help me try and get that back "forty" as I call it cleared and cleaned up... I have so many dead trees, and limbs and the grass now is getting too tall, plus my neighbor never got all of his crap from the goats and chickens he had back there before he had to take the goats somewhere else... it was so nice with them back there they kept the grass, weeds and even all of the trees trimmed for me...LOL.. 
 
They would stand on ther back legs and reach up into the trees as far as they could and eat the leaves out of them, so even the trees stayed nice and trimmed back there... anyway, I hae been trying to do a couple of things here I needed to do at home, and now I am going to take my meds, eat some cereal, get dressed and go and see if I can get that microwave and pick up the other stuff I need... then I have to go over to Mom's and check on her... get her medications reorganized, and see how she is doing... she was in bed again yesterday when I went over, and I gave her some of her pain medication for her back, and got her the phone, some water, put some Ensure on the nightstand, and left everything that she needed and came home. I have not talked to her this morning yet but I had to apply for a new insurance card, SS card and her Medicare Card... somewhere down the way she LOST those in the past week or so... I cannot find them anywhere, so I got that done this morning... but I still have to go to the post office, with the form I filled out and her Drivers License and Birth Certificate to get her SS card... I thought I maybe able to do it online, and could everything else, but not the SS card yet... in some states you can order it online now, but TX is not one of them yet... anyway, thanks all of you... I need to get going... I HOPE TO BE A BIT MORE SETTLED TOMORROW SO I CAN CATCH UP HERE, ON MY BLOG, MY NEWSPAPER ETC...
 
I am so far behind on my advocacy work, blog, and everything... I am just frustrated I cannot find time to do my own stuff... and I am supposed to have surgery on my neck on April 13th!!!! I just do not know if I will be able to... if we get HOME HEALTH coming out for MOM by then, MAYBE I CAN HAVE THE SURGERY, but I MYSelF MAY NEED HOME HEALTH HELP AFTER THE SURGERY FOR A WEEK OR SO... I will be in a NECK BRACE 6 WEEKS! And I won't be able to LIFT, BEND ETC... until that begins to "heal" which takes at least 6 weeks for it to begin those BONE GRAFTS TO BEGIN TO ATTACH TO ALL OF THE HARDWARE IN THERE... OMG YOU SHOULD SEE ALL OF THE STUFF HE TOLD THE INSURANCE COMPANY HE HAS TO DO TO MY NECK... HE HAS TO TAKE OUT THE OTHER HARDWARE, AND TRY AND FUSE THIS OTHER DISC, THEN PUT IN NEW HARDWARE TO HOLD ALL OF IT IN PLACE... so this is really much more complicated than my 1st one.... plus my lumbar spine is giving me fits also, so I know I face having that surgery also... Hugs to all of you, Rhia Steele "All things Autoimmune"

Monday, April 13, 2015

Perfect comeback #HAWMC Wego Health Writers Challenge April 13th 2016

I have to say for the most part, I don't have many people that are "on my back" about what I do, don't do, should or should not do, when it comes to my chronic health conditions, RA, Lupus, Sjogren's, Raynauds, heart problems and the list continues.

There is one exception to that although. Mothers have a tendency to be "overprotective. It matter not if the kids are 2 years old or 52 years old. For them, a Mother is always the protector. So, my Mom I must say would be the person that I am constantly having to give a "perfect comeback" to when I want or do something, and she feels it is harmful to me, or could make my conditions worsen.

So, when the subject comes up about I should not do something such as do light yard work, or gardening. Or a good one is always how upset she gets when I must drive to Dallas to see some of the physicians there. She feels I should not "drive" that far (35 miles one way), and of course he concern is more about the high amount of traffic in the larger city, than the mileage.

My "perfect comeback" for many of her needless worries is that "if I don't drive there, or I don't do the light law work, or go wherever she feels I should not especially "alone" I ask her who will? She is 80 or going to be in August, and in all honesty, she can't even put gas in her own car. My husband is parpalegic and he is not allowed to drive at all, and would not be able to if he even thought he could. Both of my grown kids are a very long distance away. Especially my daughter. She is about 8 hours away. My son, although closer is still far enough away, that he can't simply drive down here anytime I need something, or need to go somewhere, he has his own life to deal with. We have no "friends" that can do any of these things. So, if I don't clean, cook, take us to doctor's appointments, pick up medications, make sure clothes are clean, the trash is out, and the list of course is endless, then it would not get done at all. Do I like it that way? Of course not. Before my husbands accident a year ago, he was "my caretaker". He did some of the dinner cooking, could run to the market if I was not feeling well, and even though I still did many things, when it came down to it, errands, groceries, some of the cooking, etc. he could do. Which took a huge load off of my own shoulders. Now, it is no longer that way. He can walk, but not far, and not without a cane. He is not able to drive, he can't bend over, his balance is very impaired, and so forth, so "me" is the only "person" I have to depend upon.

So, usually whenever my Mom, or anyone that knows me well enough to ask me "how I manage it", or "should I not be doing a certain thing"; my answer is usually just as I've said. "If I don't take care of all of these things, then how do they get done, and who shall be able to do them?"

For others in general, I let them know, yes, I have several very "silent" but serious illnesses. But, I do listen to my physicians who all know the massive amount of "stress" related things I have to take care of. If it comes to a place that I get too ill, then I am just on the sofa, for however long that is (last time while my husband was still in the hospital I had double pneumonia) and was down for about 8 to 10 days. I've had pneumonia again since that one, and still I was down for about 5 days. Those are the times, that some things just don't get done. So, I let people know that I am fully capable of taking care of things for the most part, and those that either feel I should "not" do what I do, or those that feel since I am doing everything, that maybe "I am not all that ill"... I give them a quick reminder about the "spoon theory" also. That is one of the best ways to also explain to people about how much you do, why you do things in the manner you do, and when that days "spoons" or whatever you may want to use as an example run over, then I may have to "borrow" from the next days. Then I "catch up" when things are smoother.

It is never easy to explain your "invisible illnesses". But, for those that truly know just how ill you are, it is never easy to explain to them, you also can't just sit down on the sofa, and allow yourself to "wallow" in pity and despair. Life moves forward, and that means I must do so also, even on those days that I may feel I just can't take another step.

Thursday, December 18, 2014

Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient



Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…

I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...


I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.


When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd”  part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).

I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense. 

Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.

I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.

So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.

This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat”   or low carb stuff tends to be not that healthy at all,

I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.

I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.    

Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.

Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend  get away.

I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.

Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.

There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking.  I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.

Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!                                                                                                     




More to come......

And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....

Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....

It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.

The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….

 It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.

We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.

At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.

We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.

My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in  2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.

In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.

After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.

All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….
                                                                                              



Thursday, October 30, 2014

A Bit "Bass Ackwards" - Going to be a post from about a week ago... Topics for Blogging in November - Feel Welcome to Join in...

I had mentioned in a post about a week ago that last year in November one of our Health sites had put on a "30 days in November - 30 different posts each day event". I had actually thought it was for this coming November, then found out it was actually last year they did it rather than this year of which they done in 2013. So, I decided it would be a good way for me to find some "subjects" to post on that maybe a bit different, as well as getting all of you to jump in and join me. I said I would post some "subjects" for the days of the week, to get us started, and then please if you have any subject that has something to do with illness, medications, doctors, diseases, anything medical feel free to tell us your opinions.

So, I am going to kind of post the subjects that were from the last years November posts, so I can get us started with a few ideas.

Here We Go:

November 1st - IF you use "smart phones" or an I-Pad, I-Pod etc and are into "Apps" what is your favorite medical app? Do you keep up with your exercising, or calories, or do you use some type of to keep up with any type of health problem you have? If so give us the name of them, along with the reasons why you like those particular apps. If you don't use an application, then name a online site or sites you may use to keep up with information on health.

November 2nd - How about a "List" of things you "Know" you can do...

and others you "think you may do in the future"...

i.e. (I KNOW "I can tell my own personal health story to others")

vs. (I "think" I can cook, clean, go to the market, and wash the car all in the same day") - kind of a "realistic" look at what you CAN do in your daily life, vs. your sometimes a bit "unrealistic" view of what you WISHED you could do or still do in your daily life"

November 3rd - Do you have a "Mascot"? In other words, my "Mascot" is a hummingbird. Why a hummingbird? Because they can go any and everywhere fast as they can fly, they are able to bring beauty to our scenery. They don't harm a thing, and the bring joy all around when they appear around me feed out of the feeders I have up for them. So, do you have a "mascot" or something that represents beauty, strength, tenacity, wellness, and wholeness. Or possibly is there someone or some thing you might like to be, or something you maybe able to do, such as float like a butterfly, or someone you might like to be...

November 4th - How do you Feel about "alternative medicines" and do you use them?


November 5th - What are 5 things you can do that you thought once you were chronically ill you would not be able to do once you were diagnosed with a chronic illness/illnesses?


November 6th - Name 4 things that you are NOT ABLE to do anymore since you have became ill, that you truly miss being able to.


November 7th - Do YOU take YOUR MEDS as you should daily? Or do you take them on a "hit or miss" situation?


November 8th - Do you feel your medications are working to help you? If so how do they make a difference? If you feel they are not making you better, have you spoken with your doctor to try and change things around or do something different?


November 9th - How do you handle those that don't "get" what "invisible illness" means when you run into them? I am sure that most everyone of us have ran into those who "don't" truly understand or may not even "believe" we are chronically ill. Do you have your own  condensed "story" that you tell them, or do you just ignore them, put it off as "ignorance" and leave? Or do you some days feel like just "going off" on them and reading them the "riot act" when it comes to their own "stupidity" about chronic pain, chronic illness and how they treat you? I feel I've been through ALL. There are "days" I totally have the patience to "explain" a bit, and then there are times, I just want to YELL at them?

November 10th - Throughout your road of illnesses, diagnosis, medications, doctors, pharmacists, what was the most impressive turning point or inspirational moments in those times...how long have you been chronically ill?


So, those are a few to get you and I started. If you have ideas you might like to see discussed feel free to put them here under comments so we can see them. I will "answer" more of these myself also.....

Tuesday, October 28, 2014

How "Serious" Do you Take Your Autoimmune Diseases and Diagnosis?

I had thought about this question last night, for some unknown reason. I knew last night I needed to sit down and write about this ASAP, before the brain fog kicked in and I forgot what I wanted to say or even write about.

Yesterday, was one of those days that I had or needed to play catch-up. I needed to pick a few things up from the market, needed to make a trip over my Mom's, and as the 2 days previously, since I had gotten little to nothing done, I felt I needed to get some stuff done. Last Wednesday I had felt "fine", or well enough to dress, put my makeup on, dressed a bit more decent, and get errands completely. All of what I needed to do, meant running and trying to get everything caught up. So, off to the bank, to the cemetery, to put gas in the car (it is 2.67 here!!!!!!!  YEAH!!).. air up the tires on the car, take some magazines to the library, run into get some prescriptions of mine picked up, then to Wally World, for a few items I can't get anywhere else. I did get it all done, Then I had to come home, put all of that stuff up, get Jim, and take him to drop off some paperwork to a potential pain physician and he also needed to sign a document in front a Notary. So, we also made a 2nd trip to the bank to get that done. From there Jim needed his flu vaccine, so we headed for CVS. Well. that turned into all for naught because in the 1st place his insurance WILL NOT even pay for the flu shot, which has gone up now from about 23.00 a few years back to well over 32.00 this year!!! Yes, I know, I know - everything has gone up but damned... also there are several strains in this vaccine than used to be, but I don't buy all of that, because the pharmacies and pharmaceutical companies are RICH!   Honestly, my belief is that ALL people should be able to get the flu shot at NO COST, if they make below a certain amount of money... NOT allowing those that want the vaccine to get it, just causes more people out there that have the capacity to get sick, and run up a much higher bill that a darned flu vaccine. So, I am not sure I get that 32.00 ordeal. I just saw on the news last night how MUCH MONEY OUR COUNTRY LOSES during flu season, for those especially that DO NOT get the flu shot... and you can believe many of them WOULD had they been able to pay $5.00 for it, or whatever they feel than afford.   

All right, back on the subject that I began this entire blog post about. I have had a couple of "epiphanies" about my own chronic illnesses and chronic pain issues over the past about almost 8 months or so. I always "felt" as if I had accepted the fact that I DID have RA, Lupus, Sjögren's, and so on... along with several what I would call "sub illnesses" that have followed right along with the natural progression of these autoimmune diseases.

As I have come to figure out lately though, I really HAD NOT met these illnesses actually face to face, nor had I truly down deeply that I had not accepted that I am chronically ill, with diseases that at this time have no cures, and even though we have some medications that certainly due help to slow down the progression of some of them. I think the very first time I truly felt I was "ill" was the day my very first tooth just fell out of my mouth coming loose at the tooth/gum line for no good or practical reason. Of course I've tried to be prepared for the day I would begin to have dental issues due to the Sjogren's BUT... never was I prepared for it to happen this soon, nor that fast. From the moment the first tooth fell out, within three weeks 2 more had basically done the same. I was at the dentist more in a month than I had been all my life!!! By the time 6 months rolled around I was missing at least 7 teeth, and I believe at that time in my life, struggling with the teeth, the thought of dentures that I SWORE I WOULD NEVER have... was almost more than I could handle. Little did I know it COULD AND WOULD get worse before things would get "better"... Christmas 2013 was not the most memorable... money was very tight, I seemed to have been ill with one flare after the other, bronchitis and it did not want to go away, and even New Years came and my Birthday fell in February, and the upcoming Arthritis Foundation Summit was coming so soon in March. Yet, I had not been able to get my biologic infusion of the Rituxan (that is AFTER WE FOUGHT to get it paid for, because my insurance refused to pay all of it, thus the infusion clinic had gotten the infusions approved through their private charity program. ) But, I had had way too many issues with infections, bronchitis, & a large dose of step prednidone due to the flares, I was just down and out until the very last right--I at the last moment made a trip to our urgent care center to get some last minute treatment for a Lupus flare that had just had me down and I couldn't go (this was Friday evening and my plane was due to take off MONDAY at 6:00AM). so this was the last straw in the box per se'.

Well, someone much more MIGHTY than myself handling things. By Sunday, I was able to pack, still not feeling like jumping over the moon, but compared to the week before. So come VERY very early Monday morning. Even up until I was getting my luggage out of the car, and checking my bags it has not hit me, that I was headed for Washington DC. Once I was on the plane, settled in and on my way, it hit me, I truly WAS HEADED FOR THE SUMMIT IN D.C.!!!

After the accident on March 26th, 2014 - everything went to hell in a hand basket. I believe the night I first came home from him having that massive back surgery, it hit me square in the face, that I had CHRONIC AUTOIMMUNE ILLNESSES, and I had better get hold of myself, or I would lose it completely.

 So, for the very first time rather than this frivolous thought of "yes, I have autoimmune illnesses" that I take medications for daily. MTX, Plaquenil, and usually a biologic, now we have added Orencia in, it will be here Tuesday and Sulfasalazine. It hit me so hard, that I literally had to sit down on my chair in front of my computer. Here I was, even being a voice, an advocate, blogging about them, Facebook page and posts about them, seeing how many others suffer with these illnesses, yet, I had never really settled into the mere facts of DAMMIT the hell, I have Lupus, RA, and autoimmune illnesses... which mean forever unless someone happens to invent a cure in the next few years. My mind was spinning, my head full of thoughts... how would I survive, how will I ever be able to help Jim, how can I keep on writing my book, my blog, doing my advocacy, my activist, my Ambassador work. Will I still be able to help Mom??? Question after question rattled through my brain... and with each question, the "other side" of my thought process had an answer... and that was YES! The "answer" was much simpler than the questions were. Inside, somewhere, somehow, I knew I would be able to "handle it all"... that may mean a change in all kinds of things, and especially letting go of what "normal" used to be and begin to accept what "normal" will be as the next days, weeks, and months go by. I was more in fear of the "change in normality I believe" than I was the illnesses, or Jim's physical situation after the wreck or any of that. Change is something that is frightening to most of man and woman kind... WE are truly creatures of habit. I realize very often we don't seem to be when we are younger. But, for the most part as we age, we don't do as well with change, uprooting your roots you have put down for so long, chopping them down, and learning a new "normal" is almost impossible for some people.

I could no longer sit there trying to figure it all out in my head at the moment, because so much "unknown" lie ahead... how long will Jim be in the hospital?, and all of his physical, mental and emotional changes, it will take time. So, I "picked myself up", and I got busy with notes of what needed to be done, when, where, how and so forth. I also had a couple of things I HAD TO DO FOR ME! #1 was at the time I needed to get my Rituxan injection. I was well for a change, even though worn to nothing due to all of the drama surrounding the car accident and Jim, but I did one day go and spend about 7 hours getting the first infusion. In two weeks, I was to go back and for the 2nd round. Then I should be good to go for about 5 months.

Little did I know, before two weeks rolled around, about 5 days after the 1st infusion, I began to have the strangest things going on. I "heard" voices, I was almost to the place of hallucinating, I was not sure if I was in my own "home" or not... I could not write, barely type legibly. I was talking to the voices, all around the house and walking the floor. I paced up and down the living room through the office and into the kitchen at least 50 times maybe more. But, I could not put a finger on what was wrong. I felt "sick" in some ways, but again, I was not quite sure how. I was not really coughing, but in ways I felt a bit feverish. Finally, for some strange reason, due to the fact no matter how ill I AM I don't run fever, but I decided to check it anyway. To my surprise I was running almost 103 degree fever!!! Well, that explained the strange voices, and the oddness I was feeling but where all of it was coming from I was not sure. This was a Sunday afternoon, and that meant no doctor would be able to be contacted. I certainly did NOT want to go to the ER, too much hassle, but I did know that we have an Urgent Care Clinic here now, but whether they were open on Sundays was a stretch.

Another thing, I honestly knew I should not be driving alone. I feared having a seizure. Even though I was taking aspirin, the fever was staying fairly high. And they strange things I heard, saw and felt would and could mean I very well with fever that high have one. Thus, the alternative was to call my Mom, Which I really did NOT want to do, but there was really no other way, unless I call 911, which was ridiculous, unless I did either get the fever higher and I felt I needed medical attention extremely. Well, as the story goes on, my Mom takes me, they are open thank goodness, and I have double pneumonia... of which the physician that saw me happens to also be an ER physician at the hospital. Which was good and bad. Because I was so ill, and had all of these autoimmune issues, he felt I needed to be seen by them, and evaluated to make sure I didn't need IV antibiotics... I begged him to try anything else first, but don't send me there. After I told him about Jim, and all that was going on with everything, he reluctantly allowed me to go home with high powered antibiotics, complete sofa rest, for at least 7 days, hydrate, watch mt temp several times a day. AND if I FELT ANY WORSE or could NOT get the fever down, I was to go immediately to the ER! So, I promised I would have my meds filled, go home, and not move off the sofa for at least a week. Basically that is what I did, other than having to take out trash and changing the dogs food, water and paper... I stayed at home, watched movies, took my medication and drank loads of green tea, juice, and ate very light stuff... and it took me almost a MONTH to truly get over it all. I never developed a cough but some people don't with pneumonia. I am sure between being so ill, then going to DC on a load of prednisone, then suddenly the accident happened and I am rushed on a plane before I think I really realized it. I had been in the very cold, snowy, but not dry snow, very wet snow in DC all day long, for 2 days walking in it for hours... and to put icing on the cake all of that happened... then I took the Rituxan, so that make the cherry on the top.

That also slammed me in the gut, with a punch... if I had not had the autoimmune Illnesses I "may" not have gotten that ill. But, it could be that no matter AI or not, I still could have contracted the pneumonia. That was in early April and went on for weeks honestly, As I said above, I was not sure I would ever get over the fatigue, tiredness, dizziness, the feeling like hammered crud every morning... I ached and I was sore... and stiff... but I did ... slowly I recovered and by the Grace of God, I did without going to the hospital which was an excellent thing and a miracle.

So, twice within a month, I had been really slapped hard in the face that I had chronic illnesses, that would NEVER go away.
                                                                       
Lately, the "dreaded" head of the Wolf popped it's head up when I got to thinking about how much medication it takes to keep me well. Then I go to get the flu and pneumonia vaccines, and become suddenly "ill" for no real reason. I cannot really say that is was either one of the vaccines. I've had the flu vaccine now for years, and I had taken a pneumonia injection 5 years ago and I don't having that could possibly cause me to feel as if I did have pneumonia and the flu at the same time. But, that is how these illnesses go. What may happen to you one time, may never happen again. Or something that has never reared it head, suddenly shows up out of the clear blue ocean, leaving you to wonder why the hell it came from.

I've learned as difficult as it is each day of my life, to try and not stress over the "little" things... and try to make best of the good things... also... when these AI illnesses decide to act up, flare, be in commission, or however you want to say they are "active"... to allow my body to "tell me" what it needs. Whether that is rest, or not, whether it is a certain thing to eat, or whatever needs my body, mind and spirit needs at that time, to try and slow down, and allow it to work itself out. Sometimes it may mean just a day of rest and movies. Another time it might mean a full blown flare and a trip to my doctor for a shot and prednisone. Others may put me on the sofa for days, until it is going away. It is never easy to "slow down". Each of us know that life seems to be moving more quickly than we can keep up with when we have a chronic illness, or deal with chronic pain.

The very last moment I had lately of "Hey, stupid, you DO have an autoimmune (bunch) of illnesses, that are REAL, and nothing it "in your mind" and if it is then it needs to be there so I will "listen" to my own body. I was just going through my home room to room, looking at what we need to "finish" the whole house inside and out needed to be completed. We ran out of time and money when remodeling at purchase time, thus we still have thing that really need to be completed. So, I was throwing thing out, knowing some things are just not anything we will use anymore. My "Motto" is if we have not talked about, looked at, worn, used... something in the past 9 months, then out it goes ... and as I gazed around at ALL we need to achieve it truly once again knocked me almost to my knees... I am ILL with diseases that have taken away my ability to "run like the wind" as I did a few years ago.

When did you first have a "reality check" about your autoimmune illnesses or chronic illness/pain issues? Was it as the very first part of a diagnosis, or did it really hit you hard later on, months or even really years later, that they or it is for REAL!!! You weren't living in some kind of night mare...????

Rhia
 

                                                               
                         

Sunday, September 28, 2014

Two Days of Insanity....

As just about anyone knows who follows my Facebook and blog site, you know about the accident that happened on March 26th 2014, to my husband Jim. Most of you knew I was in Washington D.C. at the time with the Arthritic Foundation, for the Annual Summit on Capitol Hill. It was my very first time to be in DC, as well as my first time to get the opportunity to voice my own personal struggles, along with all of our struggles, involving autoimmune illness, medications, lack of doctors, especially Pediatric Rheumatologists, and so forth. There has not been nearly enough done about these illnesses, ranging from not enough doctors, not enough research, not enough knowledge to those who have the illnesses or know someone that does, whether family, caretaker, friend and so on.

I felt my voice there and since then has been integral in helping to move forward and fight against illnesses such as RA, Lupus, Sjogren's, MS, FM, CFS, and the gamut of Autoimmune illnesses that we do not even realize exist. A new factor for me this year had been that I have "pernicious anemia", which is an autoimmune illness. Rather than being "anemic" my body does not absorb enough out of my food, and keep it going in my body as it should, thus I take B-12 supplements, which by the way, it is the B-12 it effects as far as the autoimmune part of this. Of course I am on a HUGE daily dose of Folic Acid" which is B-6, due to one of the medications I take. It depletes the body's Folic Acid, so I must supplement it daily with about 400 Times the amount a normal person would need. I found out that much of my horrible sores, thrush, and mouth ulcers were caused from a lack of Folic Acid. Once I began using it daily, at a high dose (it is water soluble so you can't get "too much") my mouth is not nearly as bad about having all types of sores, ulcers, sore throats, thrush and so on as I had before.

I had not given much thought that due to the "nature" of what all has transpired that I would not be able to "voice" the everyday thoughts I feel surrounding what all happened, has happened, and what may or may not happen over the next year. In a way, that makes me very sad. The very one outlet I have to things in life, from illness, to children, to Mom, marriage, and my own frustrations with illness, I always knew I could come here and "talk" about what was happening and not at the time had to "censor" what I spoke about when it came to life. Yet, now I feel this heavy burden, although never was my fault, and I never gave any idea to it, I am may not speak about all of what is happening as the time over the next few months go by, So, if I avoid that subject it is certainly not because it is forgotten, or it is not still a huge everyday part of my life, but because life is as it is, I have to "alter" my own voice, as far as my posts, and not speak, unless it is in a very general sense of what happened. Most everyone that comes to my blog, for the most part are people that are close to me, enough that they already know the ongoing saga from March 26th, 2014. So, there is really not a "need" for me to tell others, but more of a need for me to be able to "release" my ongoing revelations about that being what it seems life as it is right now evolves around. You tend to get up when the "rooster" crows with the thoughts of it spewing out of your brain, and then all day long it seems every thing, every where, all that you do is a reminder of the nightmare of having something so horrible happen in your life. Each time I close my eyes, that is a last thought, and each morning I awake with it as a first thought, and all through the days you tend to live out in thought of it. Then while you sleep the PTSD hits, and it can also happen during waking hours. All of you who have Post Traumatic Stress Disorder know exactly what I mean... you spend your days trying to knock it off your shoulders and in the night, you try to take it out of your dreams, so you can at least have some peace during your sleep. Good Luck. Many people and I have even had the thoughts that "things" would be better as time goes by. Memories fade, time helps to heal the damage physically, mentally and emotionally. I can tell you that this... time has NOT erased, nor has it made it any better. If anything, each passing day the building up of being totally in damnation by all that is occurring around you, only grows larger, nothing fades. From the very 1st phone call, till the last piece of daily mail, to the questions, and I mean just daily questions, how are you, how are you getting by, how are things??? Questions, that sometimes I wished I could just say things SUCK! Things are worse, no better... life has lost its luster filled wonder, my dismay of voice, of writing, of being so caught up in something that I did NOT even have anything to do with, is running rampantly through my life and through my very veins, like the blood my heart pumps with every beat. You DON'T heal, not that quickly... you DON'T stop feeling guilty over something YOU DID NOT DO! You don't find a quick fix... there is none... so I plunge myself into trying to write, I plunge myself when I feel like it, trying to throw out all of the stuff in this house that are reminders of what life used to be like. I DON'T want to even remember a "good" or bad moment... I don't want to have to fear the past, present, or the future. I am sick and tired, of hearing, feeling, and being sick and tired. I am sick of bitching, griping, moaning, groaning and crying. I am sick of listening to others try to tell me it will work out, it will get better, because right now nothing seems better, everything seems out of sorts, out of whack, and I have lost all patience with those who think they can "fix" it for me. There is NO FIXING what is permanently broken.
My mouth and teeth for example. Let's get on that band wagon and have a talk about those. Of course not one dentist could fully assure me that my mouth would be better when all of my teeth that Sjögren's destroyed, when pulled out and dentures put in would be 100% better. I knew that. I am far from a moron, or from a dreamer. My "dreamer" stage left me a long time ago, after my job, and my life almost fell apart in Seattle. He threw enough sand in my eyes, and did enough damage to my heart, that I no longer am the "dreamer" I had been. I truly feel that is why the poetry I used to be able to write, sometimes 7 or 8 daily, don't come anymore. When Steve, did what he did, after bringing me over 3,000 miles away from my "home" and family, with promises that I would have a wonderful life in Seattle, to only shoot all of those good feelings down within a year or a little over after me getting settled in, with his cheating, lying deceitfulness... dreaming ... as far as being a dreamer, left. That is when a "new voice" emerged and my writing became totally different. It will never be as it was when I was that creature of wonderment, of discovery, of believing people truly cared.... he literally took his hand, reached in and pulled all of that from my heart, and threw it into the Sound at Seattle... for there is where all of those wonderment of feeling lie... in the Sound of Seattle... I can still at times feel the winds blowing across as I looked at the beautiful city, when I walked daily on Alki, loving each day there, and breathing new life, wanting and knowing a new glory would emerge.


I don't want to sound like I am that unhappy being here around my Mom, kids, and Grand Kids... and I am not putting down our lives, or feel "cheated" in some way as far as why we are here, and why we will probably continue to be right here, probably in the same house till Gabriel's horns blow. Yet, "cheated" from living life as I felt we would I can say is a terrible disappointment. Kind of like FINALLY after years and years... of not being able to say I was a "published author".... I got that opportunity... not only once but TWICE I can say I have two published books, and even have a "check" from the seller for two of them that actually sold! I am so tickled about it, I am not going to "cash" it, but frame it and put it on my wall by my computer and desk. Even though it is a mere little over 6.00, it still means that it is priceless to me. It gave me a tiny glimmer of "normal" and that a minute bit of my "hope" and Faith could actually coming back to me. Which is far from where I've been in the past 8 months or so. I had given up on normal forever, and as far as the glimmer of hope and faith; believe me it has been fading fast in the background of all that has taken place since 2005 and actually a bit before then.

As I had titled this post "Two Days of Insanity"... there were reasons for the title. I thought about "re-titling" the post, but whatever it is "called" will not change the meaning of the post in itself. I have been trying to squeeze in lots of my own personal advocacy and activist work, over the months, but between being gone to so many different appointments, taking care of all that needs to be done here at home daily. from taking out the trash to running to the market, it seems my time either is gone, or the energy that I did have in my "spoons" for the day are used up.

That should "stick" with me more than it does. When others ask me how I am doing, feeling, whether they mean illness wise, emotional wise, from autoimmune illnesses, to his issues with spinal cord injury, I really should say well I began this day with 8 spoons, getting showered and dressed took at least 2, maybe 3. By the time I had coupons ready, a list done, and ads matched up there flew out at least one at the very, very least. THEN I am looking at having at the most 5 spoons left. Well, by the time I run errands, get through the market, which here seems to be a nightmare any day of the week, or have to go and do something at Mom's,or it is laundry day, or I have to find and fix something for dinner, if I had already used up the left overs.... so I can contest, by then there are OVER 5 spoons used up, and my day is not over yet. 

I still have dishes to do, right now we are fighting "sugar ants", which I was raised here in TX, so here we called them "piss ants". Don't ask me why, but I always gathered it was because they were so extremely tiny... they will sniff out one crumb, and within an hour invade an entire bowl of dog food, if you are not watching. I decided to try something "harmless" to the dogs... so I read putting back soda around their bowls would stop the ants. They won't go into the baking soda. So, guess what? Both dog food bowls have baking soda surrounding them. Knowing my "Chi_Weenie".

Then I also read ants hate tea bags, like after you brew your tea, let the bag air dry and put it in the corner of a shelf where you have stuff it won't hurt and where you have seen ants. Hell I even bought the "good" any bait traps, and I am still finding ants in stupid places. I guess they are either hungry or thirsty. But, dammit I am sick of trying to keep from spraying Raid and getting the heck rid of them. Even though about a week ago, I bought "Raid" for ants mainly with a get this "Lemon scent". I hope the hell someone does not think it is furniture polish!!! And I sprayed it on a rag, and wiped down the splash boards window sills, everywhere and everything I could without getting it around food or anything else. And even after doing that, wiping, vacuuming, and spraying where I could. Plus I leave nothing "open". Anything from chips to bread, goes in the fridge. If it is something that possibly will attract an ant it goes in plastic or glass containers with lids on them. So, that the hellish little devils you would think would move on. I am NOT a fan of any kind of "bug".... from a spider, mosquito, I don't care what it is, if it is "creature" of any kind, it does NOT belong in my house. So, I am a real stickler for spraying the yard, all around the outside perimeter of the house, and then I keep the roach baits and ant baits out and update those about every 6 months. The ONE thing I cannot get rid of and that I despise so badly is those little freaky looking "newt" lizard looking things. They just make my skin crawl. Oddly enough all my life here in TX, before I went to Seattle in October of 2001, I had NEVER seen a "newt" or whatever at any of my homes... never... no kind of lizard thing. I had a mouse once, and actually had a possum climb up our pipe that came into the house to the water heater... and she actually took her scared butt down, got by the steps of our front porch and stayed there for weeks with babies clinging to her. It was weird. But no damned things like that. So, the first time I saw one in our home we live in now, I had no clue what the heck it was. Weird almost a pink iridecent looking thing that ran fast, looked like some kind of strange lizard, and I was hell bent to rid my house of those little bastards (excuse my French)... so here I go online to find out what to do to get rid of the damned things. We had gotten just about rid of the few mice in the attic, at the time they put that insulation down that is kind of like shredded looking newspaper. Other than that an occasional water bug, which won't last long here. or a spider that I also despise, thus I just knew I would find something to rid my house of those things. They certainly were not the cute little "GEIGO" Gecko... and even if they were I don't want them in my house....

Well, guess what ladies and gents! It is almost impossible to get rid of them. Undoubtably they are not effected by bug sprays, roach baits, spraying the outside all the way around the house, including the porches, and those damned things are just not subject to any of the poisons or baits. Well, I figured out they "hide" in the grooves of the siding and the frames of the windows and doors. They also hide behind out two front porch lights. Plus I would bet they are in the insulation of our walls. So, everything I read said leave them alone, they eat bugs and are harmless. They maybe harmless but they sure as hell don't look or move as if they harmless. They creep me out just about more than anything other than a snake.

Anyway, how I ever got off on that tangent I am not sure other than the one thing that came to mind, is one of our "storm windows" on the  kitchen window has just "popped loose" and was hanging there by a couple of screws. I almost fainted! If that sucker falls out and breaks we are in deep crap. They are not cheap, and we still need to buy all the ones that go over the windows in our music room. There are I believe there are 5 of those at about $80.00 plus a piece, because they are made to specifically fit the windows. We were going to get the man who put up all of the rest of them to get us those for a bit cheaper rate, and then he would put them up  ... of course something else always comes up thus we did not have the money or time now and again to finish them.. and they need to be done... those old windows back there do not even have any of the push pins and the stuff you put around the windows to seal the glass in.... the glaze is just about out of all of them, then we had hail knock a hole in one while Jim was in the hospital, so I have it all put together with cardboard and lots of duct tape... 9,999 uses for duct tape, a wire coat hanger, and WD-40!  

More later.... got to get dressed to take my Mom to shop...

Thursday, March 6, 2014

PART 2 - Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)

since this story was "ongoing" until even right at this moment, I've decided to bring the "rest" of it to you in a 2nd part)

Thus... this is a continuation of my prior post....  (PART 2!) -



Do Your "trust" your Own "instincts" Over some of the Medical Professionals (AutoImmune Illnesses or Not)...


Being Caught in an Upheaval Between An Insurance Company, A Physician's Office, My Own Autoimmune "Flaring" Body, A Pharmacy, and What to Trust? Myself, My Doctor... Any of us... we are all susceptible to "Medical Mistakes"... And How do We Avoid those? Or Can We?...


First of all I want to bring something to your attention, that my own Pain Physician brought to mine last Thursday. I felt after I had written the 1st part of this, surely that "ongoing saga" would end. Well, folks, I was mistaken, and here is the "rest of the story"....

I am not sure how much you have paid attention, but when was the last time on any "piece of medical documentation" (i.e. especially insurance and so forth) have you actually seen a doctor or physician called a "doctor or physician"? No sir, probably not in a long time. Now, the term "provider" has taken over the entire realm of medical professionals, our "Primary Care Providers"? What the hell is that? I consider "PCP" to mean Primary Care Physician. It was well pointed out to me, that in the 1970's, the terms like doctor, physician, nurse, and all of the "correct" titles of our medical specialists out there suddenly disappeared. Almost as if "David Copperfield" had came in and took them out of the language. Anyone can be a "service provider". Your plumber is a provider of service. The guy that takes your groceries out to your car, also is a "service provider". What about the mechanic that works on your car, "service provider". Well, she or he, DID provider YOU with a SERVICE! But, did they provide you with a medical item? Did they check you for an infection, take your blood pressure, write down all of your health concerns, and then turn those over to the next professional, your physician, that certainly should know more about your health and body, than the tires on your car. Good question. Same way with us. If you start looking at insurance paperwork, bills, anything medical, you will begin to notice, you are no longer a "patient". You are no longer someone who is ill, and is in need of a doctor. You are a "client", or some other manner of terminology that takes the "medical" portion out of it. Now why would this happen? Well, as my Pain Physician explained it, it was mainly due to "Medicare" and of course then the insurance companies that knew if they "took out" specific terminology for people such as physicians, nurses, patients, and so on... and put in generic terms such as "provider" or "client", then alas they can "charge a different price for things". They can take what should be just what it is, a physician's officer, and turn it into a "business", with a board of directors, and do you think those people sitting on that board of directors cares about all of their "doctors, nurses, medical professionals, and the patients?" Well, more than likely they are thinking about the "stock holders", or the "political power", or the "loop holes" that can NOW be created, because this is not a medical doctors professional office. It is a business, for clients. 
I found a very interesting article about this. After my Pain doctor and I had a very long conversation about how Medicare, Insurance, and the entire realm of our Medical Professionals, doctors, nurses, labs, hospitals, clinics... are going straight down the tubes, while those "fat cats" sit up on Capitol Hill, laughing in our faces, and could care less if I have a Lupus and RA flare! So what? BUT, if I could for ONE DAY deliver HE or SHE with the severity of pain, stiffness, fatigue, the LACK of any quality of life, could not go to a meeting or to work, could not clean the house, or go shopping. If THEY could have each and every symptom many of us go through in just 24 HOURS, I wonder where they would be looking, crying, begging, and doing everything in their own power to have a physician DO SOMETHING. Plus they had to fight the pharmacy, the insurance company, the doctor due to his fear of giving medication due to all the red tape, how long do you think it would take to make some HUGE CHANGES on Capitol Hill, and in our Doctors offices, pharmacies, insurance companies, and I would bet that those "lobbyists" that make those big bucks for supporting charging 2,000.00 for a 5.00 bottle of medication or more... all of that would be put to "bed" quicker that any one of us could shake a stick at. 
Boy, talk about having the "wool pulled over many of our eyes"! Let's face it, those of us "fighting" tooth and nail, almost dripping blood just trying to get SOMEONE, ANYONE to help are NOT stupid people. But, we have become so disenguaged, disenchanted, tired of the battle, lost hope in the true meaning of what this nation is SUPPOSED to stand for... become those that are giving up, because we do not feel we can win against Congress. Whether it is state, local, Federal... and all in between those with MONEY DO... and those with OUT MONEY do WITHOUT!
Here is the article link and if you do a search you also will be able to find information on this and why it took place:


I release this gentleman goes on to talk about "Concierge" type of Medical Care. In many ways, it would make total sense. For us that do NOT have insurance. For those of us who must pay cash. These physicians in many ways would make "more money" by charging the patients on a "cash basis" than what the EVER see from an insurance company! 
I don't know about you, but when my "Explanation of Benefits" comes in from Humana, and in the first place a doctor has charged $450.00, for a 3 minute consultation, right there you know things are screwed up.  But, take a look at what the insurance "really" paid that physician? He charges $450.00. The "insurance" gives a "negotiated" discount of $395.00. Let's say my "co-pay"was $40.00. Well, let's see. The insurance paid him a total of $15.00! In the first place, I PAID MORE in a "co-pay" than the INSURANCE DID on the actual bill. And guess what? My insurance paid a surmountable $15.00 for that visit. 

Now I am not sure about you, but something sounds too fishy in the fish tank on that one. What about these bills (and my husband STILL argues it is NOT true, but it is)... you go into the hospital for a "routine outpatient surgery". The outpatient portion of the hospital bill goes to the insurance company for this and it is $15,000.00. Your co-pay is $200.00, of which they quickly make sure you pay BEFORE THE SURGERY! You get the "EOB" in a few weeks. Okay there is the charge for $15,000.00. You paid your $200.00 co-pay. The "insurance plan" negotiated with that outpatient clinic that they would pay $300.00 on that procedure. So, they got "billed" $15,000.00! They were told the patient owed $200.00, which you paid. And the insurance paid an entire amount of $300.00! So that means that bill in total was paid "correctly" at a total of the $500.00. What about the other $14,500.00? Well, that outpatient clinic has to "write off" that, because they were told that on the one procedure, it should only cost an average of $500.00. Thus the rest they "eat", basically! Now before you think WHAT??? No wonder they can't stay in business! NO ONE STOPPED to think that the procedure you had may NOT have cost no where near $15,000.00! Let's say on the average it costs $550.00 for that same thing to be done over the nation. SO, who charged whom TOO MUCH, and WHOM paid whom too little or too much? I worked in a hospital business office for 6 years, which was about 5 too many, as a patient "counselor". In other words, I was the one trying to get them to pay their bills. Well, I also did a great deal more than just that. I "refiled" claims, helped them get the insurance to pay, and so on. NOT any more! Boy, "if" they file it, you are lucky. And to get them to "refile" a claim, is nearly impossible! Plus, if I had TALKED to any of my patients the same way I have been spoken to by those in the medical business offices these days, I would have lost my job the first week I was there! I cannot begin to tell you that I've been called everything from an idiot, to a moron, to told I was stupid and should just pay the bill! And that was the "nice" people! Yes, but it was NOT so nice, the times I am correct. When I FINALLY get to the RIGHT person, and I AM CORRECT, they filed WRONG, and then called me an idiot when they told me my Mom owed over $500.00 for a surgery, that she only paid $200.00 for the MORNING of her surgery, I can tell you that ALL of the women in that "office" are NO LONGER employed there. It literally took me 6 months, over that really, hours and hours of phone calls to them, to the insurance company, and visits when I was basically told to get out of the office.... and THEN A LETTER TO THE PHYSICIAN! Guess what! Within 3 days, there was an extremely NICE gentleman that was HEAD over that outpatient facility, that begged, sweetly, and apologized 20 times for "their horrible mistakes". And how he told me that he "thanked me", because they had also BILLED OTHER PATIENTS, for MONEY THEY DID NOT OWE! MMMMM... wonder how many elderly people paid those bills... and no telling how much... and then hopefully got a refund! 
If you cannot get anywhere, I can tell you a letter to the proper physician, usually works quite quickly. Especially when he is a portion of the Board of Directors, of the medical facility! But, more than once, even over a huge issue from when I was so ill in 2010, and spend way over 6 weeks in two hospitals. Again after months of fighting, I wrote my doctor a very explain and thorough letter, and within about 5 days, the entire situation was a mute point!

Alas comes to the NOW what I shall call the 2nd portion of a "Rhia's Week from Hell" with doctors, medical facilities, pharmacies, and the like.

I did the "stool samples" for the "PA" Monday, a week ago tomorrow. They were taken in, and I found out easily that they could have been processed within a couple of hours, no problem at the hospital. But, no the nurse from hades told my husband it would be 3 DAYS! Well, as he had told her, I would be dead by then. As he tried to explain again for the 10th time, We WERE very concerned about this HORRIBLE, unstoppable diarrhea I had. Again, not a budge... just another comment about "take her to the ER" if you don't like what we have to say! 

So, three days went by, and at that time, I was NOT well yet at all. In fact the flares were worse, I was  even more weak and fatigued, and all I knew to do was NOT take those antibiotics for sure, keep hydrated as much as possible, rest, and try and keep something bland in my stomach. Then I found the natural probiotic (IF we could find it in this small town) MIGHT help. I had read several people giving it rave reviews. Thus since I was NOT going to the ER, unless I got much worse, or if something else happened, we did what we could do ourselves. Well, it took about honestly 9 days, I believe, but first back to the days for the "test" results. No phone call, no email (they usually email me labs etc), nothing. SO, Friday, I called. This is truly the answer I got. I asked if the results were in. The girl on the phone said, well yes, they are. Then she said well, I will print them and lay them on the "PA's" desk. Well, I knew then there was NO WAY that chicken woman, nor her nurse would call me back. And so I was correct. About 7 hours later, I get a call from a VERY new. very young nurse there, and she said. Well, the PA said there was no bacteria in the lab work. And THAT WAS IT! NOT anything like, well how is she doing? Did she get any better? What about the Flares? NOT ONE DAMNED WORD!...NADA... ALL I heard was no bacteria, and click... that was it! Which, I already expected! But, the audacity of a "professional" that is supposed to be a PA, to my doctor who has been seeing me now since 2008, and HE is the ONE that usually IS EXTREMELY CAUTIOUS when it comes to me! In fact the "last time" I saw him, I had bronchitis. That was about 3 months ago or less. He told me then, YOU are very complex. You can go from a mild cause of bronchitis, to being in ICU on a ventilator within hours! I ALWAYS take special efforts to insure you get exactly the care you need due to the autoimmune issues you have. NOW, from that to his "PA" basically telling me to kiss her butt... within less than 3 months time! Wonder if they have PROBLEMS THERE????

*********** NOW. there is MORE to the STORY!!!!!!

After a very long drawn out affair in getting the PAIN PUMP FINALLY refilled on MONDAY, that also took forever, even my pain doctor just has this "odd" attitude. He seemed to be almost more cordial to my husband (and he is a new patient) than me, who has been seeing him since 2008. I NEVER did get quite over to him about the severity of the pain I am going through, and I am STILL going through yet this morning... 

This is NOW Thursday at almost NOON on March 6th! I am in still SO MUCH excruciating pain, I could just fall off the Earth right now and be happy.... for at least I would NOT feel so CRAPPY anymore! 

And again the ongoing "Rhia's Murphy's Law" continues. Rather than have 3 "things", mine are like at 53 things and climbing each day. Again, as I've said over the past 14 days or so, this has turned into total insanity.

AS I just said, today is Thursday. On Tuesday, my Mom had an appointment with the jackass doctors office, but just for labs. She was also told that he would not be in the office until after the 25th of March. So, they moved her appointment to then. Well, she went in Tuesday for the labs, and you know how she is, she is VERY nosy. :) Well, after asking about so many "new faces" and she is right, everyone that used to be there is just about gone. The past year each time you go in either everyone in the front office is different or the nurses are different... it is just nuts. Well, first of all she found out the majority of the employees that are there now, have been there LESS than 9 months. That right there tells me something is very wrong.

She finally asked where "Dr. Blair" was? Mom told them about the conversation of him being out until the 25th of March and due to that her appointment was changed to that day, rather than next week and so forth. Mom said she could see them all "huddling" in the hallway down from the main front door of the office. I am sure probably decided what Mom would either ask next or how to handle it. She found one of the nurses that have been there for awhile, and the one thing is that our Dr. Blair, with a wife and THREE stair step kids, like 5, 3 and less than 2 or so... are "splitting the sheets" so they say. Undoubtably his wife is divorcing him. Well, does not surprise me, because first of all he is NEVER at home... never... plus the "nurse" he had for a very long time, all of a sudden quietly "disappeared" about 7 months ago... and she was beside him for everything! Where he went, Nursing home, hospital, weekends, nights, whatever, she was with him. I kind of got the impression that their "time" together may have not been "all" work... but I don't know that at all. That is just something I observed even 3 or more years ago.

Anyway, it gets better. About 2:45 in the afternoon my phone rings, and it is the doctor's office. They said "Ms. St...." and I said yes, you mean my Mom? They said no, you. I said oh, well okay, you have me. What's up? NOW (funny how "lab" work changes suddenly)... this nurse is saying that the SAME PA that told me there was NOTHING in the lab stool samples on Friday last week, all of a sudden DOES CONTAIN a BACTERIAL TYPE YEAST - kind of like Thrush! I almost dropped the few teeth I do have in my mouth out on the floor! My question was " What did you say?" Again she repeats the PA's, name and said she needed to let me know they called in a script for me, because I do show a "bacterial type yeast issue" in the samples from last!

Well, I was in such shock, dismay, mad, angry, pissed, ready to slap the wall, kick my trash can, call them liars.... and of course,  I said , well, okay. She tells me to "stop" a med I usually take for one day, take this pill, then I can go back to my regular meds. Now how the hell a stool sample, collected a week ago yesterday, that shows the results arrived back at the doctors office I think late Thursday night, and Friday seemed to "show nothing wrong", ALL of a SUDDEN, guess a bird did it. ;) and now it DOES SHOW something wrong!

My first thought, and I am almost 100 percent sure I am right, me getting that phone call yesterday, was ALL tied into MOM, and that lab work she had done about 2:00 pm yesterday in the office... and all of her questions led up to someone deciding it could be that THEY BETTER go LOOK, since my bet it NOT ONE SOUL saw those lab results until yesterday. I thoroughly believed they were printed, put on the PA's desk or possibly the Doctors, and they told the nurse to call me back and tell me nothing showed up. If I were a really betting soul, I would be betting lots for sure.

I also believe that after Mom's inquest while she was there, did some shaking and moving.  I am sure our doctor heard it all... and you can believe he probably has those results, and he had looked himself yesterday and saw that there WAS A PROBLEM! Also, I had asked Friday for those to be sent to me from the labs. I ever got them. So, yesterday, I asked the nurse to please find somebody that can send those labs to me today! And this is now I know how new the bunch is... I've had 4 people in the past couple of weeks tell me that have no clue how to "upload" or work with the "patient portal"!!!??? WHAT!??? That is what it is for... so WE can get OUR results etc... and not have to wait for someone to copy it, mail it etc... with the few keystrokes it takes, it is on my portal and ready for me to read. So, within about 45 minutes sure enough it was on my "portal". AND right up AT THE VERY TOP... the first thing that was "abnormal" and way out of range was the "bacterial yeast infection"!!!

Then I go to the dentist yesterday morning, thinking he was going to begin "patching" and working on the ones he could. Well, nope, he ONLY looked, and said well I see at LEAST 6 holes (in 6 different teeth)... 2 or 3 at least hurting on the right side so badly, I cannot stand anything to touch them. And guess what... he is out of the office until next week .... and he can't even begin until next Tuesday... and he has osteoarthritis so bad in his hands... he cannot do many things. like he can't extract a tooth at all... and all the time he works on you...he moans and groans... I feel for him... he is not that much difference in age than myself a few years older, but basically his career is almost gone... and it sucks... BUT it also sucks that now I have to wait IN PAIN until next week. And further more, he won't really even know about whether he can "patch" anything... once he begins looking they may ALL HAVE TO BE PULLED! So, even that has been weighing on my mind... I have the other dentist here that my dentists sends me to when it is something like having a tooth removed that he can't do any longer. But, the more I wait the worse they get. So, I am trying to decide whether to just go to the other dentist for all of it... but I do know he charges quite a bit more also... and if I have that many... then even just to pull the damned things will be over 100.00 EACH! I might as well go to the oral surgeon, have them all pulled and begin on those "snap in" type of dentures. Which if Humana will do as the woman told me on the phone, and PAY for it since this is caused by ILLNESS, then the money is not such a huge issue.

Besides with the way things are looking, I am facing dental implants, even though these dentists are not exactly for them, if you can keep a tooth in your head. Well, I agree. Besides my hair, LOSING my teeth was something I swore I would never be able to live with. Well, guess what? Guess I am living with it.

So, then let's deal with this pain pump issue. It finally got refilled Monday, lock me out for 24 hours while the new medication made it's way into the spinal canal, and then I could use my boluses. Well, I thought at that time, from there it would be a good possibility that my body may "adjust" to the Enbrel after a couple of doses, my pain pump would be back as is, hopefully for the most part this stomach mess is going away, BUT we have a dramatic weather change. A couple of days ago it went from 70 DEGREES at 2AM and by 8AM it was dropping quickly. By Noon of that day it was WELL Below FREEZING and the wind chills were sitting at a new record of about 4 degrees. I knew two days before, that we were going to have one hell of a change, my entire body was screaming out about it. Sure enough it hit... and the pain just went down hill faster than the temps did... as of now, the pain is in so many places, and It hurts is so many different ways... I cannot begin to even describe how badly it really is.

I don't know about the dentist yet... and how I will handle it all. I took my 3rd injection of Enbrel this morning...  and I know it is early, but I do not see any difference, in fact I feel worse. Now Jim has the chills and body aches again, and has been feeling "flu like" symptoms since last night.

ALL of the lists, of lists... of the list and the other lists that I made... are NOT getting done... I can't seem to think about one thing for very long, other than PAIN! If I get up and do something, of course it takes my mind off the pain. But, then I am NOT getting anything else done, and I don't have anything ready for the trip in less that two weeks. Under the circumstances, and if things do not dramatically improve with my pain and health, there is no way I would make the trip anyway. I am so fatigued, run down, hurting, not sleeping, could care less about what I eat, anything... I have had everything from  a piece of cake for breakfast to graham crackers, apples and peanut butter. Or toast, or you know mainly something I don't have to chew very much. I was drinking coffee yesterday morning and slivers of teeth were coming off! And I was NOT eating anything!

I tell all of this, and there is yet much more to finish this... so there maybe a 3rd "method" to my already slim to none, to insanity of my brain before I am through with it.

I will say this.... I am working on doing some things for the Arthritis Foundation in regard to some advocacy stuff a couple of them asked me to help out with.

I want to ....talk about there 3 BILLS - Congressional Bills... pieces of Legislature that are going to effect ALL of us.... especially those with chronic pain, chronic illnesses, autoimmune issues... plus Pediatric issues also.... here are the numbers of them and a brief description... if you have time... take a bit and go to really SEE and UNDERSTANDING the critical issues of these... and just how much worse things will be if we don't make changes NOW!

There is much more on the Arthritis.org website! Take a look under advocacy and you will see what they are addressing in 2014 as priorities with Congress. Write or email your Congressional Leaders, Senators, House of Representatives, the President of the USA, the head over Medicare/Medicaid.... and any all you can find that have to do with these bills and laws, or any others pertaining to our health and well being... call, email, twitter, post on FB, snail mail... but DO SOMETHING! If things were not so BAD as far as Medicare and that entire ordeal.... I, nor many of you would be in the horrible shape we are in.....

 Patients’ Access to Treatments Act (H.R. 460)

http://www.arthritis.org/advocacy/advocacy-priorities/high_costsharing/


H.R. 1827, the Pediatric Subspecialty and Mental Health Workforce Reauthorization Act

http://www.arthritis.org/advocacy/advocacy-priorities/pediatricrheumatologist/


"Post-Osteoarthritis and Rheumatoid Arthritis" in the Peer-reviewed Medical Research Program, Congressionally Directed Medical Research Program of the Defense Appropriations Bill, FY2015 


http://www.arthritis.org/advocacy/advocacy-priorities/dod-research


Part 3 to follow!